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Summit of Pen y Fan

McArdlers: Caoimhe, Eóghan, Bronte, Sarah
and Elisa.

Young Peoples walking course – Wales

IMPROVING LIVES

Not English speaking?

   

Our website is prepared in English, but the “Languages” button explains how to you can configure Google Chrome browser to automatically translate our site into your choice of about 160 languages.

 

We have instructions in:
• 中国人 / Chinese • Deutsch • English • Español • Français • हिंदी / Hindi • Italiano • Português.

MUSCLE GLYCOGEN STORAGE DISEASE

CAMPAIGNS
Our campaigns of activity and awareness raising.

IamGSD campaigns for early diagnosis of McArdle’s and other mGSDs, the adoption of international standards of care and the provision of centres of expertise.

 

PUBLICATIONS

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IamGSD has publications in English (and a few other languages) to support people with McArdle disease, their families, schools, employers and doctors. 

RESEARCH
Our research agenda for muscle GSD.

IamGSD works to identify the needs of people affected by McArdle disease and other muscle GSDs, and to stimulate, encourage and support research efforts to meet these needs.

 

COURSES

Learning management techniques on a walking course.

IamGSD promotes walking courses to help people improve their condition. These have so far been held in the USA, UK and Germany, with more countries to be included in future. 

Main sections

NEWS  NEWS  NEWS  NEWS

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October 2026

CALLING ALL 
LIVING WITH 
MCARDLE’S!

• An international research team, based at the Neuromuscular Centre at Copenhagen University, is developing a McArdle-specific symptom rating scale to better capture patients’ experiences, track changes in symptoms, and evaluate responses to future treatments.
• Your input is important! 
• If you have a diagnosis of McArdle Disease, please take part in this anonymous, 20-minute survey.
• Help advance McArdle research by participating and sharing! 
• Survey closes March 1, 2027.

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September 2026

THE MCARDLE’S 
EXPERIENCE
COURSES 2027

AGSD–UK has announced that the 2027 walking courses in Wales will be held in Eryri (Snowdonia).
• The base will be Snowdon Lodge in Tremadoc, which has hosted the courses several times in the past.
• The course for Adults (over 18s) will be held over 30 July to 5 August. 
• The Young People's course (children with a parent/guardian and young people up to age 25) will be held over 6 to 12 August.
• More details on AGSD-UK website very soon.
• Bookings open in December.

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June 2026

AGSD-UK GLISTEN MAGAZINE SPRING 2026

AGSD–UK has published its Spring edition of “Glisten” magazine. This has several articles specific to muscle GSDs. T
• The McArdle’s Experience – walking courses.
• Welcome to Dr Chiara Pizzamiglio, new clinical lead at the national McArdle disease service.
• Retirement of Dr Richard Godfrey, exercise physiologist with the McArdle’s  clinic.
• Gina’s McArdle’s journey – website information led to a diagnosis.
• How we monitor McArdle’s research.

News
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